Pilgrims Hospices help family make lasting memories during COVID-19
In January 2021, Malcolm Ball from Oare near Faversham was referred to Pilgrims for pain management of his terminal colorectal cancer.
He and partner Amanda Brown decided they wanted to become civil partners; they’d been together 20 years but never married.
Due to the COVID-19 pandemic, opportunities to do this were limited, but Pilgrims helped to make it happen and give the family memories that will last forever.
COVID-19 has presented unique challenges for hospice care, with restrictions impacting on peoples’ end-of-life experiences. Despite this, Pilgrims has adapted and continued to go above and beyond for patients and families in these extraordinarily difficult times.
After a few weeks in the Canterbury hospice, Malcolm found that not only was his pain stabilised, but also that the hospice itself came to feel like a refuge. He made friends with other patients and staff, particularly Steve Allwright, a Healthcare Assistant (HCA).
Amanda said: “It made an enormous difference to him that Pilgrims staff were always on call, ensuring he received the best care. Steve felt like a friend to Malcolm and made the hospice feel like a home away from home.
“Everyone at Pilgrims went beyond the call of duty to look after us, both emotionally and physically. Martyn Yates, Spiritual Care and Complementary Therapy Lead, was fantastic in helping us organise our civil partnership. We planned for it to happen in Sittingbourne but Malcolm was very poorly by the set date, so with Martyn’s help we sought an exceptional licence to marry in our own home.
“However, when the day came, Malcolm was anxious and didn’t think he’d be able to leave the hospice, which had become a place of sanctuary and safety for him. With his sister, Karen, and brother-in-law, Tim, waiting outside to bring him home, our plans looked in jeopardy.
“Steve, who was off work that day, gave up his time to come in and chivvy Malcolm into the car: “Do you want to get married?” Malcolm replied yes, so Steve said, “Well come on then, I’ll come with you, let’s go”. And with that Malcolm came home for a fantastic ceremony surrounded by flowers. Our son, Emil, and his partner, Tracy, were witnesses. We couldn’t have a party due to lockdown, but the ceremony was broadcast via Zoom to family and friends near and far.”
Malcolm with his son, Emil
Steve added: “During the time Malcolm spent with us, I got to know him quite well. Even through his tough days we always had time to chat and I was honoured to accompany him to his wedding. Amanda was a tower of strength during Malcolm’s illness and he could not have picked a better partner to help him through his journey. It was a privilege to have known them both.”
Steve also helped Malcolm produce a voice recording to leave as a legacy for Amanda, using The Blackbird Project initiative developed by Pilgrims.
Steve said: “One Saturday morning, Malcolm and I sat down and scripted an agenda of his life with Amanda; there were around twenty five parts to his story. Once we had put this in place, Della Green, Occupational Therapist, recorded Malcolm’s story with him, which was then transferred to a memory stick and given to Amanda. I think it was one of the longest recordings ever made since the conception of The Blackbird Project, over an hour long.”
Amanda added: “It feels very special being able to hear Malcolm’s voice now, talking about our life together. It’s hard too while things are still raw, but I know that having the recording of him speaking about some of the things that meant the most to us both will be a lasting comfort.”
In those last days, everyone at Pilgrims did all they could to allow me as much time as possible with Malcolm, calling me back overnight when there were changes, and I was able to be with him at the end. That care and consideration has done much to ease the trauma of the last year.
Amanda
Malcolm stayed at home for three weeks after the ceremony before returning to the hospice for his final days, as he had wanted.
Amanda continued: “In those last days, everyone at Pilgrims did all they could to allow me as much time as possible with Malcolm, calling me back overnight when there were changes, and I was able to be with him at the end. That care and consideration has done much to ease the trauma of the last year.
“Pilgrims is the most amazing place. I feel so lucky, as I know Malcolm did, that we were able to benefit from the care offered. If only there could be a Pilgrims or other such hospice everywhere; to have that level of individual attention and care is something I wish for everyone.
It’s been such a comfort since Malcolm’s death to be able (with a little licence) to talk about us as husband and wife, and to have the memory of our wedding in our living room, with the support and love of family and friends watching it online, however distant. I hadn’t realised how important it would feel to me, but it means the world.
Amanda
“And as for our civil partnership ceremony, it wouldn’t have happened without the enormous generosity and pure kindness of all the staff involved; Steve above all, but also everyone who went above and beyond. On the day itself, when I started to think it might all fall through if Malcolm couldn’t get home, I discovered that behind the scenes, Pilgrims and the register office staff had been working together to try to ensure it could happen.
“It’s been such a comfort since Malcolm’s death to be able (with a little licence) to talk about us as husband and wife, and to have the memory of our wedding in our living room, with the support and love of family and friends watching it online, however distant. I hadn’t realised how important it would feel to me, but it means the world.”
Each year Pilgrims Hospices give care and comfort to over 2,500 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
1st July 2021
Sandi’s London Marathon for running buddies and Pilgrims Hospices
Sandi Starling from Ashford will take on the Virgin Money London Marathon for Pilgrims Hospices on Sunday 3 October 2021. She is a volunteer run leader for Hamstreet Runners, and is raising money in memory of fellow group member, Mark Hinson, and the spouses of two others who were all cared for by Pilgrims.
Sandi has already raised more than £1,200 for hospice care across east Kent, aiming to reach her £2,000 fundraising target before the big day.
Mark after winning his age category for Hamstreet Runners at Wittersham 5-mile run in 2016
In 2020, during lockdown, Mark was diagnosed with kidney cancer and died within three months. Sandi said:
“It was a massive shock to all of us, not least his wife, Belinda, and daughter, Anna, who are also members of our running group. Mark was a lovely man and a really helpful runner; he always took the time to help others. Many of us are still getting over his sudden loss.
“Belinda told me how lovely Pilgrims staff were when they cared for Mark in his final days, especially during the difficult situation with COVID. They made sure that Belinda and Anna could talk to Mark on the phone and video call when visiting was restricted.”
Two other group members – Ian Kirby and Julie Buckland – experienced Pilgrims’ care when their spouses, Nicky and Guy, spent time in the Ashford hospice at the end of their lives. Both spoke very highly of the care that Nicky and Guy received.
Ian said: “Nicky spent her last days in a quiet room at the hospice. The care and sensitivity shown by staff was such a help at a very dark and traumatic time. They do incredible work in very difficult circumstances, and they deserve our gratitude and support.”
I’m running in Mark’s memory, to say thank you to all the Pilgrims team who made his very last days the best they could be. I want people to realise that the hospice is a fantastic place and be aware of the services it provides.
Sandi
Sandi continued: “To have had two runners lose their spouses was awful for them, but as a running group the loss of Mark really hit us. We are so grateful for what Pilgrims did for him.
“Due to COVID, we couldn’t attend Mark’s funeral or do anything to celebrate his life. Our running group stood on the village green as he made his final journey, all wearing our running tops to say our goodbyes, but I wanted to do more. Running the London Marathon for Pilgrims will be a perfect way to honour Mark, raising money for the charity that helped him when he needed it most. Although he would have been able to run those 26.2 miles in half the time I will!”
Ian and Nicky
Sandi has run marathons before but this year’s London Marathon will be a very special event. She is being supported in her fundraising by family and friends, and is planning a coffee morning where people can pay to run and eat cake afterwards.
She added: “I’m running in Mark’s memory, to say thank you to all the Pilgrims team who made his very last days the best they could be. I want people to realise that the hospice is a fantastic place and be aware of the services it provides. One of my current runners, Charlotte Davies, is a Pilgrims nurse, and I often say to her that people who give end-of-life care are heroes.”
Sandi
Charlotte said: “The ability to continue providing high quality end-of-life care that is free to patients and their relatives is imperative. As a nurse, I see first-hand what it does for people. Home visits, accessing physio, occupational therapy and counselling support; all this enables people to try and live with as much quality as possible. I’m sometimes asked if Pilgrims services are free, and people are surprised to learn that there is no cost to them.
“Fundraising like Sandi’s is vital to Pilgrims; it helps ensure we can continue reaching the people who need us.”
Sandi continued: “It won’t be fast or pretty, and who knows what it will be like on the actual day with restrictions, but I’m determined to run those 26.2 miles. All the way round I’ll be thinking: “Mark would run this twice as fast as me but would stay with me if I needed help.”
“I’ll be motivated knowing that he’ll be with me somewhere when the going gets tough, saying: “You didn’t need to do this for me”, but I wanted to do something and this is it.”
Inspired to follow in Sandi’s footsteps and run the London Marathon for Pilgrims? Charity places for 2022 are available; apply here.
Each year Pilgrims Hospices give care and comfort to over 2,500 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
25th June 2021
Hospice nurse Charlotte runs seaside Brighton Marathon for Pilgrims
Charlotte Davies (35) from Ashford is a community Palliative Specialist Nurse at Pilgrims Hospices, so she witnesses first-hand the positive impact Pilgrims’ care has across east Kent.
As a keyworker, Charlotte has continued to work on the frontline throughout the COVID-19 pandemic, but her support for the charity doesn’t stop there. On 12 September 2021, she will run the Brighton Marathon to raise vital funds for Pilgrims and help ensure its services remain free to all those who need them.
Charlotte in her Pilgrims uniform
Charlotte worked in intensive care before joining Pilgrims in 2014; initially a community nurse, she changed roles to work as the Ward Sister for one year. After maternity leave, she returned to Pilgrims as a community nurse, a role that she enjoys immensely.
Charlotte completed a degree in End of Life Care in 2015 and began an MSc in Palliative and End of Life Care in 2019.
She said: “As a Pilgrims community nurse, I’m privileged to visit people in their own homes. We provide holistic care, including symptom management advice, psycho-social support and referrals to both internal and external services. Being able to continue providing high quality end-of-life care to people in east Kent is imperative. Pilgrims services are free, and fundraising ensures that we can keep offering them.
“So many people are kind enough to take time out from their busy lives to raise money to ensure our patients and relatives continue to receive the care they need.”
Charlotte originally planned to run the Brighton Marathon as her first ever marathon, but then COVID hit and the event was postponed – first to April 2021 and then to October 2021. So instead, her debut marathon was the Kent Spring Marathon in October 2020, which she also ran in aid of Pilgrims.
Being able to continue providing high quality end-of-life care to people in east Kent is imperative. Pilgrims services are free, and fundraising ensures that we can keep offering them.
Charlotte
As part of her fundraising for Brighton, Charlotte is selling colourful memory ribbons; these are being sewn to her Pilgrims vest, which she will wear on marathon day, and each one will have written on it the name of someone who has died. Anyone can purchase a memory ribbon, and they are not only for people who have been cared for by Pilgrims.
Charlotte’s memory ribbons
Charlotte said: “My aim is to run in memory of people, regardless of who they were or where and when they died – for example, four ribbons are for my grandparents who weren’t cared for by Pilgrims. They are a visual reminder of who I’m running for. This makes it all the more personal for me; I will be honoured to run in memory of so many people and when the going gets tough over 26.2 miles, I’ll be reminded why I’m running.
“If someone would like a ribbon, they can donate via my JustGiving page and tell me the name to go on it by leaving a comment when they donate. I’ve suggested a minimum donation of £3 per ribbon, but people have been giving more than that, which is lovely! Any amount is much appreciated.”
Lydia Todd, Challenge Events Fundraiser, said: “Charlotte has been waiting so long to run Brighton Marathon and I can’t wait to finally see her cross the finish line and receive her well-deserved medal. Charlotte’s idea to run in memory of people, by carrying their memory ribbon with her, is truly heart-warming. It’s turning her fundraising, and personal challenge, into a community event and it’s amazing to see people come out to support her efforts in full force. We’re proud to have her as a member of #TeamPilgrims!”
Charlotte added: “People can sometimes be surprised to learn that Pilgrims’ services are free. Through fundraising, we can help ensure that they remain accessible to all those who need palliative care and support in east Kent.”
You can keep up to date with the Charlotte’s fundraising journey and purchase memory ribbons on her JustGiving page.
Inspired to follow in Charlotte’s footsteps and run the Brighton Marathon for Pilgrims? Charity places are available; register here by 5 August 2021.
Each year Pilgrims Hospices give care and comfort to over 2,500 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
10th May 2021
Nursing at Pilgrims: What it has meant to lead through a pandemic
To celebrate Nurses’ Day 2021, we spoke to Kate White, Head of Nursing at Pilgrims Hospices, about how she and her team have risen to the challenges posed by COVID-19.
Although it has been a difficult year, Pilgrims nurses have continued to provide vital, compassionate and holistic end-of-life care to people across east Kent. The pandemic has also provided opportunities to strengthen nursing practices, which will have a lasting, positive impact on future hospice care.
How have nursing practices and patient care at Pilgrims changed since the COVID-19 pandemic began?
The pandemic has brought infection control and prevention into sharp focus. The care we give at Pilgrims has remained at the highest standard, but having to wear personal protective equipment (PPE) requires us to take more time preparing to give care rather than being able to be spontaneous.
At the start of the pandemic the policies, procedures and systems that we’re so accustomed to were changing rapidly, sometimes several times a day. It was often hard to keep up, but Pilgrims staff embraced what was needed and continued to provide excellent patient-centred care.
Pilgrims nursing team L-R: Kate White, Steve Allwright, Laura Gooch, Sheila Moorhead, Carol Lightfoot, Michelle Swann, Sam Waters and Donna Shanahan
What have been some of the challenges presented by COVID-19 and how have Pilgrims nurses overcome them?
The biggest challenges relate to our everyday communication; talking to patients whilst wearing a mask takes away the personal touch and the non-verbal communication a smile can convey. Our community team had to adapt to talking to patients over the phone rather than face-to-face visiting. This can be very difficult for both patients and staff, especially when discussing sensitive issues; it doesn’t come naturally to everyone, does it?
Nothing will ever replace the closeness of a loved one, but we have tried to offer reassurance and comfort in these very difficult times.
Kate
We also had to find other ways of communicating with relatives, as our visitors policy restricted who could come into the hospices in order to ensure we safeguarded our extremely vulnerable patients and our staff, who were keeping hospice services going. It has been very distressing for so many, but we have used technology to bridge the gap and help enable people to keep in touch.
We’ve also used the Matching Hearts project, where the patient has one crocheted heart and we give the other to the family to try to help them feel connected.
Nothing will ever replace the closeness of a loved one, but we have tried to offer reassurance and comfort in these very difficult times.
Have any positives come out of the pandemic?
As a team we’ve proved our ability to change at a rapid pace when required, to find new and inventive ways of working.
Those of us who have been in healthcare for a long time have never experienced such a coming together of so many providers, and this has had a lasting and positive impact on patient care and service delivery.
Kate
There has also been some brilliant collaborating with our healthcare colleagues in the wider community including East Kent Hospitals University NHS Foundation Trust, Kent Community Trust, Kent County Council and primary care services. We shared issues around capacity, PPE supplies and staffing, plus anything else we were able to help each other with. It also provided a chance to update everyone on our current situation; we called in every day, seven days a week, to ensure our patients had the best care and our staff had the best support. Pilgrims was the only charity to join this call, and from this we became involved in supporting nursing homes by teaching their staff how to use PPE.
Those of us who have been in healthcare for a long time have never experienced such a coming together of so many providers, and this has had a lasting and positive impact on patient care and service delivery.
Kate White, Head of Nursing at Pilgrims Hospices, with nurse Debbie Todd. The artwork is displayed on the ward at the Canterbury hospice. The hands are a show of unity, strength and teamwork. Staff put one hand on the paper on each shift they came in for, choosing the colour that represented how they felt. It reflects the rainbows painted by children during the pandemic to thank key workers.
What does a post-COVID-19 future look like at Pilgrims, and how will Pilgrims nurses lead patient care within it?
We’re told that the pandemic will be around for a while yet, so we will continue to provide the best infection control and prevention we can. Our infection control team, led with the expertise and dedication of nurse Debbie Todd, will ensure we are kept up to date with all current guidelines and practices. I have no doubt we will continue to deliver high quality, holistic care to our patients and their families, whatever the situation is, to the best of our ability.
Each year Pilgrims Hospices give care and comfort to over 2,500 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
7th May 2021
Ninety-Nine Days: A story of the Benjamin’s voyage around Britain
Retired doctor and sailing enthusiast generously donates his book royalties to Pilgrims Hospices. Irving Benjamin’s book Ninety-Nine Days has so far raised over £400 for the end of life charity who cared for his late wife Cate.
Irving hopes this will be the first of many donations from the book royalties.
Cate and Irving
Irving is a retired surgeon, having worked as a Professor of Surgery and head of department at King’s College Hospital from 1990 until he took early retirement in 2006.
Originally from Scotland, Irving lived in London from 1979, and moved to Deal with his first wife in 1997. Sadly she died suddenly in 2000, and he married Cate in 2006 having already known her as a good family friend.
Irving said: “I had taken up sailing in the 1990s, Cate and I bought our 33 foot yacht ‘Vega’ together, and enjoyed coastal and cross-channel sailing. We made our first trip around Britain in 2007, helped by a number of friends aboard at various times, but it was in that year that Cate discovered the breast cancer which was to change our lives for a number of years. We interrupted our travels, over wintered Vega in Inverness, and returned to London while Cate underwent treatment. We did some sailing in the Netherlands in 2008 and the following two years, but when Cate was discharged from follow-up in 2012 we decided to complete our around Britain trip including the north coast of Ireland, the Inner Hebrides and Orkney.
“The whole trip lasted Ninety-nine Days (the title of the book), and I kept a detailed illustrated blog, and later edited the text and illustrations of the log into a book, with Cate’s help and critical assistance. I promised Cate that we would publish it together; I had hoped that would happen during her lifetime, but sadly I was not able to make that deadline.
“Cate developed recurrent disease in 2016, and underwent further treatment, mostly at Kent and Canterbury Hospital. As her disease progressed she required the support of Pilgrims Hospices; with regular phone calls and personal visits from hospice nurses and from Dr Andrew Thorns.
She had a beautiful non-religious ceremony performed by a wonderful doula, and is buried in a lovely location in Deal cemetery, in what will eventually be our double grave.
Irving
“By June 2020 it was decided that no further active treatment was indicated, and from around that time she was practically bedbound. In accordance with Cate’s wishes we had decided that she would remain at home with me for as long as it was possible, and preferably to die in our own bed. The care we received from Pilgrims community care team was absolutely second to none, and it was helpful that as a retired doctor I was able to manage symptom control alongside the other carers. I was with her all of this time, prepared food for us to share, and read books to her in bed. Luckily, this all happened before the most severe strictures of the lockdown, so she was able to have a few short family visits. She became quite confused in the last two to three weeks, and died quietly in bed in the early hours of 14 September. She had a beautiful non-religious ceremony performed by a wonderful doula, and is buried in a lovely location in Deal cemetery, in what will eventually be our double grave.”
“We have the most wonderful extended family, Cate has two children living in Deal, with grand-daughters aged six and eight, and two children in Canada, with an eight-year-old grandson. I have two children of my own in the UK, and one in Australia, and between them four grandchildren aged between 13 and 29! They are generous with their love and support and I’m comforted to have them all.
“We enjoyed music together and would go to festivals whenever we could, including Glastonbury. We were also regular supporters of Scottish and South African rugby (Cate was born in Durban), and went to all the games at Murrayfield and a few in Paris, Rome and Dublin.
Irving and Cate at Glastonbury Festival
“Although I didn’t manage to publish our adventures before Cate passed away, it’s now published through Amazon Kindle Direct Publishing. It’s available both as an e-book, and a paperback. The paperback is a much nicer publication, because the e-book does not do justice to the lavish colour illustrations and the glossy cover, but unfortunately Amazon pass on the high printing costs for the paperback, which puts the price up a lot in order to be able to make enough in royalties to pass on to Pilgrims Hospices. I’ve just received my first royalties, and I am able to pass on the whole sum, which is now just over £400, hopefully as the first instalment of many. I’m keen to have the book sold as widely as possible, in order to boost the donations, so the more publicity it can get the better.
“After Cate’s death we set up an online tribute page, which has raised over £1,000 for the hospices. In addition, a group of us have been writing together for the last couple of years as Deal Poets Society, and we launched our first anthology, Love, Life, Loss at the end of 2019, with a celebration at The Lighthouse in January last year. Again, all the proceeds from that work have gone to Pilgrims Hospices; we are planning a second volume for the end of this year.”
Benj (Irving Benjamin)
Dying Matters Awareness Week is a chance to come together and open up the conversation around death, dying and bereavement.
Tell your story and join in the conversation on social media using the hashtags #InAGoodPlace and #DMAW21.
Pilgrims Hospices host community events throughout the year for the general public, aiming to open up the conversation about death and dying; with film screenings, poetry readings and Death Cafes and much more, there’s something for everyone.
Each year Pilgrims Hospices give care and comfort to over 2,500 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
29th April 2021
Pete’s family raise thousands to support future hospice care
Hannah Austin (28) from Ebbsfleet experienced Pilgrims Hospices first-hand when her dad, Pete Austin (57), was cared for by the charity. The family asked loved ones to donate to Pilgrims in lieu of funeral flowers, hoping to raise £200 in Pete’s memory; they surpassed this target, raising a phenomenal £2,020 for the charity that provides vital end-of-life care for people across east Kent.
Hannah with her dad Pete
Pete, a retired escalator engineer from Birchington, was diagnosed with pancreatic cancer in October 2019. Hannah said: “He enjoyed a healthy vegan diet, keeping fit, socialising down the pub with family and friends and going on holidays with my mum Viv. They were happily married for 35 years. He was a kind family man who loved life.”
She added: “Dad was very brave and went through all the treatment he could, including three months of intense chemotherapy. Unfortunately, even though he fought so hard and did incredibly well, it did not work for him, and the decision was made to stop all treatment.”
At this point, Pilgrims stepped in to support Pete and his family. The charity organised doctors and nurses to visit every day and keep him comfortable, enabling him to stay at home and be cared for by loved ones. Hannah said: “They supported my dad and the whole family; they would regularly phone my mum to check she was doing okay. Pilgrims were always just a phone call away if we had any questions or concerns.”
“I found out I was pregnant the week my dad passed away and luckily I managed to tell him, which was the last time I saw him awake. Even though it’s sad as we know how much he wanted grandchildren, having my little girl has helped our whole family get through it. My brother’s wife was also pregnant at the time, so now my mum has her hands full with two grandchildren, which she loves!”
To me, Pilgrims means a safe place for support when you need it the most. As we received such brilliant support, and because we know Pilgrims relies so much on donations, we wanted to give back so they can continue their good work supporting other families in the future.
Hannah
Pete passed away peacefully on 31 May 2020. Due to COVID restrictions, only a small number of people could attend his funeral in person, so the family asked loved ones to donate to Pilgrims via a JustGiving page instead of sending flowers. Initially aiming to raise £200, their hopes were far exceeded.
Hannah said: “We were astounded to raise over £2,000 for Pilgrims, which shows just how loved our dad was.”
“To me, Pilgrims means a safe place for support when you need it the most. As we received such brilliant support, and because we know Pilgrims relies so much on donations, we wanted to give back so they can continue their good work supporting other families in the future.”
Each year Pilgrims Hospices give care and comfort to over 2,400 people in east Kent who are coming to terms with an illness that sadly cannot be cured. The charity support patients to live life as well as possible until the very end, free from pain and distress.
